At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that.
Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows and spread the word about fibromyalgia through their online social networks.
So what’s fibromyalgia really like? The best way to find out is from patients directly. Since we opened our doors to fibromyalgia patients in November 2008, we’ve had 13,826 fibromyalgia patients join our community and share their real-world experiences with this chronic pain disorder, which is characterized by pain or aching in the muscles as well as multiple points of tenderness.
Among other things, patients with fibromyalgia have reported that:
- The most prevalent symptoms include pain, fatigue and memory problems
- The most widely used prescription drugs are Duloxetine (Cymbalta), Pregabalin (Lyrica), (Ultram), Gabapentin and Cyclobenzaprine (Flexeril)
- The most common lifestyle modifications are rest, physical activity and exercise as tolerated and hot showers
They also share practical tips for living with this debilitating condition in our forum every day. Some of the most popular topics in the fibromyalgia forum room include sleep issues, pain, research, coping and support.
Here are some recent forum comments about the disease’s effects:
- “Sometimes I wonder who I am. It is like all the pain and problems define me. The pain controls my life.” –Fibromyalgia patient, age 50
- “Being sick has permeated so much of my life that it comes up in almost every conversation I have.” –Fibromyalgia patient, age 33
To learn more about living with fibromyalgia, you can also explore individual patient profiles to see what people are saying about their symptoms, treatments and quality of life. Get to know one of our fibromyalgia patients today.
I have found that exercises daily , massages and manipulations in a weekly basis really help .I take 2 daytime pills with Quinine and 1 night time plus Stazodone for sleep /depression really put me back on track. There is day with little pain others that I have trouble climing stairs. Going to the gym every day, A M and having exercises with a trainor is very rewarding but expensive since none of that is recognized by my insurance.
I am lucky to have a wirlpool tub that helps a lot.
I, too, have found exercise to help, however, some days I can’t hardly raise my arms to do the exercise. This illness has changed who I am. I used to love to go and do, now, I am lucky if I can go and do, and then when I am done, I pay for it. If I have an out of town business trip and have to be in the car for an extended amount of time, I am bed the next day.
I have two older children who knew me when I was well. I have a younger child who didn’t. He gets jealous and can’t understand when the other two talk about things I used to do with them. How sad is that? It breaks my heart.
Work! I have to work, but it is not easy. I am the insurance provider for our family, so I have to keep my job. When I get home from work, I have to lay down. Which brings me back to exercise. I know I feel better when I have time to exercise. I work 8-12 hour days 5 days a week and once and a while 6 days a week. I don’t have time to exercise.
To end this comment (which is long, I know) I would not wish this illness on anyone. It takes over who you are.
Hi I am new to this and i have been suffering terribly for a looooong time with pain fatigue,memory loss stiffness muscle and joint pain and stiffness.None of my Drs would listen to me,I went to a Rheumatologist who sat there and told me to my face that I would propably NEVER find out what was wrong with me and that i would just have to learn to live with it ! Went. I walked out of her office made a complaint and NEVER went back That was last yr and this has been going on sin e 2013 I have finally found a PCP WHO ACTUALLY LISTENS OMG wow I am so happy well he finally agreed that yes it is Fibro but the meds. That they use i have already tried and they don’t work for me so im asking anyone out there if you have any ideas i do the hot shower but thats temporary. Any input or advice wold be greatly appreciated bcause of all of this i have the depression and anxiety and everything else that goes along with this so help would be great.Thanku from a nrwbe to this. Laura